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Bowel disease and inflammatory arthritis

Hi. I (45F) don't have a specific question, just interested in people's thoughts and if there's anyone who has experienced similar.

I was diagnosed with IBS when I was 20. I'm now 45. I was referred for a colonoscopy to rule out other things but I was moving areas a lot and fell off the system so never had one. Lived with IBS symptoms (mostly diarrhoea, occasional constipation) for many years and generally knew my triggers (certain foods, insufficient sleep).

In my 30s I was diagnosed with inflammatory arthritis. Later it was determined it is psoriatic arthritis with axial disease (spondyloarthritis). Was prescribed sulfasalazine. My IBS virtually disappeared while taking it. But it wasn't very effective for the arthritis and I couldn't tolerate side effects so I stopped it after 8 months.

I then took etanercept and then Humira for about 9 months but when they discovered I still have bilateral sacroiliitis I was switched to Cosentyx, a different type of biologic. They also added a low dose of methotrexate.

During first lockdown in 2020 I started to get rectal pain. Sometimes sharp and sometimes burning. I assumed it was haemorrhoids so ordered some suppositories and cream. It soothed the pain but didn't help symptoms go away. Over the next two years the rectal pain would come and go and I'd do the same thing.

The IBS would still come and go through this whole time. In 2017 I had a prolonged bout of diarrhoea lasting about 7 weeks. I ended up with an anal fissure as it was so heavy. I mentioned it to my GP while seeing her about something else at the time. She ordered a fecal calprotectin test that was completely normal, though the diarrhoea had gone by the time I took the test.

In late June this year I had a respiratory virus, presumably Covid. Stopped methotrexate while I was unwell. When I recovered I started to get a very upset tummy. A lot of diarrhoea and bellyache. Also several mouth ulcers. It settled after about 2 weeks but then returned. Sometimes with the rectal pain but not always. Then in mid-August began another prolonged period of frequent diarrhoea with crampy tummy pain that is still ongoing. I'm having up to 6 loose or watery BMs a day, though usually 3 or 4. No blood or weight loss. The rectal pain has settled for now.

As well as general abdominal discomfort I get a severe painful spasm in my lower right abdomen, right under the pelvic bone. Also a sharp pain to the left of my belly button about an hour after eating. I'm now also noticing a loss of appetite. If anything, IBS used to always make me hungrier.

Things that are different to my usual IBS:
- No particular trigger, just about any food sets me off
- Rectal pain
- Abdominal pain not relieved with BMs
- Abdominal pain often worsened after BMs
- Frequent acid reflux
- Pain near my navel
- Intense lower right abdominal pain
- Loss of appetite

Any thoughts or recognition gratefully received. I know I need to see a GP. I'm mostly dreading a lot of investigations that lead to nothing as the process of getting my AxSpa diagnosis and appropriate treatment was exhausting.
 
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my little penguin

Moderator
Staff member
You need a scope and imaging
Assume your in uk so getting those will take a long time
Cosentryx does not treat crohns
Humira does
My kiddo has crohns and arthritis type II associated with inflammatory bowel diseaex
Meaning his flares independently of his crohns
Axial SpA typically needs a separate med biologic from crohns
My kiddo still has ERA so not affecting the spine to date
Because if this ge can get by with Stelara and methotrexate
But as you know Stelara does not treat the spine
His arthritis is bad in his hands /fingers

definitely see a Gi
Get fecal caloprotectin and scopes with imaging MRE etc … plus capsule endoscopy
 
Thank you for your response. Gosh that's a lot to deal with when you're young, including the treatment. I hope he's doing better on it.

I know Cosentyx does not treat Crohn's - I've read that it could possibly even make it worse? I know I'm jumping ahead massively here but it did cross my mind that if this is IBD I hope they don't take my Cosentyx away and replace it with something to treat both, because it's the only thing that has helped my spine. Humira worked miracles on my peripheral joints, but never my spine. I can't honestly remember whether my bowel symptoms improved on Humira, only that sulfasalazine made a noticeable positive difference.
 
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